Welcome to our new diarist

Welcome to our new2 diarist, Susan Jacobson!

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Where do I begin?

I'd like to say hello to everybody and just give all of you my thanks and admiration for writing about your lives, struggles, hopes, fears, joys, sorrow -- for inspiring, entertaining, helping -- everything. This website is sure a masterpiece! I feel close to all of you in one way or another.

I'm not really sure how to begin this blog, so I'll start with a little background... 15 Years ago I started getting a feeling that I could not take in a full breath of air into my lungs. My left leg and foot was swollen and the doctors I went to gave me antihistamines, prednisone, other assorted remedies, thinking it was something allergic. I was driving a semi-truck at the time, so I only got 1 to 3 days at home each month -- more often than not, 1 day at home.

On my one day off per month I started going to an endocrinologist -- internal medicine doctor, who told me the problem was in my thyroid. When I complained about the swelling in my foot, (later both feet), he would say, "I ought to check your TSH." Then after the test he would tell me I needed more thyroid replacement hormone. No matter what I said, it was "Check the TSH." When I'd see him later, he would say the TSH was fine. Anyway, I finally asked him for a bunch of different tests I read about on the net, and each one came back abnormal. That's when he told me -- "Don't go to a cardiologist, See a rheumatologist."

I went to the rheumatologist, who saw the swollen feet, listened to my lungs, etc., took one look at the chest x-ray and suspected congestive heart failure and primary pulmonary hypertension. This was 12 years down the road in symptoms. The first rheumatologist sent me for tests. The pulmonologist gave me a methcholine challenge and said I had asthma. What about pulmonary hypertension? That will take care of itself as we treat your asthma. An echocardiogram was "normal." So I treated for asthma and did a six month followup with the rheumatologist.

That rheumatologist left the clinic. I told the Rheumatologist #2 I still had the swollen feet --

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Part Two

Rheumatologist # 2 sent me to a Stanford trained cardiologist in San Antonio -- Fernando Lopez. If you ever need a cardiologist, this guy is the one to go to. My stress test was normal, echo showed heart failure, which was Class III. My Holter test was somewhat abonormal, and I had untreated angina. I had a right & left heart catherization which showed right heart failure, diastolic dysfunction and elevated pulmonary artery pressure (40).

Dr. Lopez had me feeling much better in short order with the heart failure meds.The Department of Transportation does not allow drivers to have any condition with congestive heart failure, which is probably a good rule for public safety. I know it was getting more and more difficult for me to perform my duties -- but it was only my thyroid, right?

So I came off the road in December, 2007, moved to Helena, MT and resumed my career as a Paralegal. I was a paralegal for eight years before driving a truck -- and am very happy to be home every night, doing interesting work that I enjoy, and, did I mention, home every night????

Montana is beautiful, mountains, clear blue skies, clean clean air, wonderful air, but I did have a heck of a time adjusting to the 4000 foot altitude. I would walk a few feet and be about to pass out short of breath. I would try and vaccuum a room and be about to pass out short of breath 10 feet into it. Trying to do anything would leave me short of breath. I thought all this was altitude related.

At my cardiology check up in September, I told the doctor what was going on -- he ordered an echocardiogram -- and my pulmonary pressure was 40; I had right heart failure. This time it was called cor pulmonale, with pulmonary hypertension the cause of the right heart failure. The doctor didn't really give me any advice -- just stay on the same meds (heart failure meds) and get a primary doc.

I asked the primary doc what to do -- eventually he sent me to cardio-pulmonary rehab program, which was great, because I could do less and less as time went on -- got me on oxygen at night, and to a pulmonologist.

Well here I am now, still with the pulmonary artery pressure of 40, my pulmonologist and I arguing about whether these symptoms I "think I have" are worthy of treatment or not, him trying to convince me it is all "sleep apnea," when my index is very low... I tell you I finally figured out before my last visit that I didn't want to hear about sleep apnea because I still had angry feelings about the doctor who kept harping about TSH. That's why I didn't want to pay attention. I don't care about minor things -- I'M SCARED ABOUT PULMONARY HYPERTENSION!

Anyway, I sleep with the CPAP maching, tied into an oxygen concentrator I bought, because it was cheaper than renting, take the heart failure meds and anti anginal drugs, keep oximeter logs, and struggle through work each day. I try to do some exercise of some sort every day and some days I swim. I love to swim. I am not the same person I was even a couple of years ago -- I don't have the same sharp memory I had. Hanging up clothes or filing at work drain me of all energy. Making copies makes me exhausted. I don't know how much longer I will be able to work if this disease progresses. Sometimes I want to throw in the towel. Sometimes I feel like there is no way I want to go on. I HATE SHORTNESS OF BREATH. I HATE DIZZINESS. I HATE COLLAPSING. I HATE IT ALL.

Then there are days I learn something new or find I can do something I couldn't do before -- like do somersaults in the swimming pool. Then I am so excited an joyful. Or if I do something clever at work and feel good about myself -- I know there are good days and bad days. The weather seems to play a part -- Last winter was so rough I wanted to give up nearly every day. This summer has been so good I wish it would last forever, but the temperatures are already starting to drop; weather is changing...

I promise not to write so much in the next entry -- but there's my story so far. Thanks for letting me share.

Susan

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Overdoing it

Well, I over-did it Friday. I'm blaming it on the boss. He through me for a loop by giving me an hour off. I was working on one of the most interesting cases in the office, doing investigative work and talking to a detective, and he tells me I can leave early. I was so excited about working on the case that I really didn't want to leave, however, free time is golden!

I ended up at the gym -- in the pool to practice my backflips and front flips. Instead of the usual, leisurely pace, (1/2 hr to an hr of easy swimming with lots of rest in between), I found that flipping over in the water is easier if done faster, so I did. Then I had extra time, so I did more.

I don't know, even after cardio pulmonary rehab, how much is supposed to be too much. The various articles on the web say not to lift weights or not to do aerobics when you have PH. Does anyone know the truth? We're all going to go, anyway, so can't we do what we want to at this point?Fortunately, I made it home safely driving, though I do like to take some oxygen after swimming, and left the tank at the office. I'm going to have to get one for the car, as well as the office, and the concentrator at home. During an earlier period in life, I remember working out, the strongest day in my life when I lifted tons of weight and felt so good I could do anything. Afterwards, I got in my van, drove down the street and blacked out behind the wheel temporarily, crashing into the car ahead of me. No doctor had any explanation for why -- maybe try drinking a coke after a workout or resting a while before leaving the gym. I was young, strong, healthy -- I think it was a foreshadowing of this condition, where if you do too much you could faint.

The damages I have to live with today are extreme fatigue, muscles that I didn't have stiffness, and a feeling of overwhelming laziness. Still have the usual shortness of breath walking down the hall of the house... but I think I'll just take it easy today, let the body recover and hope I can wake up for church tomorrow.I don't want to give everyone the impression I'm super athletic or something -- I just realize what's down the road and I'm trying to do as much as I can now -- because I feel that the more you do, the more you CAN do. I realize I have it good right now, being able to work, walk 9 minutes on a treadmill, swim a few laps in a pool. At one time it was only 1 minute on a treadmill or exercise bike, and only float a little in the pool. I still have days where stirring a bowl of cereal makes me short of breath. Of course, the doctor doesn't believe me on that. I probably look too good.

I'm not a supermodel, either. I gained about 10 lbs a year while driving the semi truck, despite trying to walk at every rest area. I am a bit Rubenesque -- Don't you wish that would come back in style?

I love intellectual things -- National Geographic, Atlantic Monthly, the New Yorker, reading the cannon of western literature (or the books on the list), used to play the violin 6 hours a day -- love classical music and the opera, would like to be able to sing opera. That's another thing you really need your pulmonary arteries for. I can run out of air and need to go on oxygen after singing at someone's church service.

I guess I'll try and do some laundry now....See y'all later.

Susan

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Surprise from the Insurance Company

Well the big "other shoe" dropped.  My insurance for the last 15 years realized that I moved from Texas to Montana and cancelled me effective September 1st.  I've applied for 2 new policies and working on the VA app --Wish me luck!

I think/fear/dread whatever that I will be in the high risk pool -- Anybody else go through this?  I may not be able to afford insurance and may have to give in to this disease just to get treated. 

I hope there is a better way.

Susan

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Fun Before the Winter Sets In

Eva, my 90-year old friend with C.O.P.D., Katherine, her caregiver, &  I went to the Farmer's Market (every Saturday iin Helena between 9 and 1 during good weather).  First  Eva & I fought (good-humoredly) about where to park -- I wanted to park in a lot at the end of the market, and she in the handicapped parking in the front.  I was the DRIVER, so we parked where she wanted!

What you've got to know about my good friend Eva, not only does she cheat at power-chair/scooter races, but she seems to know all the ends and outs of Helena and where and how to park.  She was right,  her parking spot was a good location. 

I borrowed her walker with a basket on it to carry my portable oxygen tank.  It is only five pounds, but I felt like carrying any kind of weight at all today would have been too much.  What a great gadget that walker is!  Katherine pushed Eva in her manual wheel chair, with her portable concentrator in the back basket.  Eva is as light as a feather.  Eva was being a little vain, not wanting to wear her cannula, but I felt rather cool wearing mine.  There were several other members of the oxygen club out there today, and it felt good recognize each other...

This is kind of weird for me, because I have never been into fashion before, but would it hurt to have some beads or sequins, or some color in the cannula?  Make some kind of statement -- We're here, We're oxygenated,  we still have cleavage?  Some kind of fashion fun?  How about it crafters -- anybody want to help me design some kind of snap on canula-cover?  The first time I wore oxygen I felt like a cross-dresser going out for the first time -- real conspicuous and uncomfortable.  Especially when I went into a restaurant.  Now, I didn't feel physically uncomfortable at all -- I took to oxygen like a duck to water.  I like the neoprene cover my tank has -- it looks cool, almost, but the cannula tube just doesn't go with anything ....

Walking the farmer's market,  just going up one isle and down the other, only two isles, took a good hour -- which is more than I ever walk.  Even with a lot of rests and wearing oxygen, I wore myself out. Worth it?  You bet'cha.  Lots of color, fiddlers, giant zucchinis, pumpkin & banana bread -- and good friends with me.  Lots of crafters -- the candles, blankets, beaders, etc.  Just for the color harmonics it was worth it. I even got to pet a French Alpine goat kid, that's just getting his winter hair!

After I prodded Eva a bit about turning on her oxygen -- she's always doing the same to me -- she took her 2 liters like a lady  when I told her she would look cool like me wearing her cannula like I was. 

Katherine, her caregiver, is an angel.  She stood in line to make the purchases for us and she is lots of fun to be with. She pushed Eva and made sure we rested when I was tired.  I'm doubly lucky, in that Katherine is also my housemate, and a very special gift from God.  It is somewhat amazing that a person like Katherine exists -- someone so caring, giving, energetic & strong, when there are people like Eva and I that need her so much.  She is awesome!

Another thing I'm amazed at is Eva's energy.  She has C.O.P.D., 90 years old and can do stuff for hours.  I'm almost 40 years younger, only have PH, and would collapse trying to keep up with her.  Katherine helps her can jellys, jams, syrups, make pies, candies, garden, etc.  The two of them never stop!

I'm also kind of puzzled by the fact that even though both of my parents smoked for 40 --- 50 years, 2-3 packs a day each, they never got any kind of shortness of breath or lung disease!  Is that fair?

Anyway, it was a wonderful hour, and I rested at home on oxygen the rest of the day.  The weather got up to the 80's and the goat's got her winter hair early.  Did you know a goat could have such soft hair?  I wish I could keep a goat!  But my cat (soul mate) will do.

I hope everyone has a wonderful Labor Day Holiday, even if you're not in the U.S.  Susan

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Warning -- Sad -- Sad

I'm overwhelmed with sadness -- heart heavy, almost tears, throat tight.  It's all because we cleaned our aquarium Sunday.  I don't know what we did wrong -- too much of a water change -- leaving the fish in while cleaning (it usually doesn't bother them) -- what.  It was sparkling clear at the end of it, then all three of the gorgeous beautiful goldfish died.

First the biggest one, orange and white, about the size of my fist, started having trouble, and she was gone in a couple of hours.  The black moor fish with bug eyes died with her. 

Now, finally the little cream colored with orange spots.  She took 48 hours to die.  She started with just a little difficulty swimming, and she was so strong and had so much life force I couldn't bring my self to euthanize her.

Then she got worse, so we put her in a bucket of distilled water, thinking it might help.  I tried a few times to pull her out of the water & help her end her misery, but she was so strong and had so much life force that I just couldn't do it.

Finally when I got home from work she was on the bottom of the bucket and couldn't move her little fins very much.  I took her out of the water and put her in a plastic bag and took the air out of it.  This time she didn't resist, didn't even try.  She wanted to go.

The only problem is that she kept breathing for an hour and a half in the plastic bag.

I feel like such an idiot.  Killing is not natural to me and it hurt to have to do it.  I should have done it sooner and not let her suffer, but, it's kind of like me -- I want to die a lot sometimes, just because it is so hard to breathe and move and it really is suffering.  But I keep going on.  I guess I bonded with the litttle fish and felt her precious spirit wanted to go on -- at least to try.

I finally looked up euthanasia. I tell you I feel real bad, like a complete idiot.  I could have just stirred some baking soda into the water.  I'm not going to get any more fish.  It's just too sad to lose them.  I don't care what anybody says -- they know you and have personalities and you can get attached to them.  They're precious little creatures that God made.

Oh well.  So sorry.  Crying now.  Poor little fishie is whereever God has taken her spirit. 

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Here comes winter!

So there's a frost warning tonight and I'm already agonizing about how much ice I'll have to scrape of the windows of my car in the morning.  How cold it will be and how much earlier I'll have to get up.  How much SOB and angina I will endure until I'm done scraping the ice and can rest in the seat while driving the car -- unless there's a lot of traffic and I'm stressed and get angina in the chair.  Fortunately I'm not SOB in a chair unless I was already that way before I sat down.

I'm thinking about my next doctor's appointment.  Should I cancel, since I don't have insurance?  Or try and work a second job to pay for a visit?  Is the visit really necessary?  Can I wait another month?

Still the same old symptoms -- walking too much and I feel like I' m going to pass out.  I was in the country store yesterday and barely made it down the main aisle.  Glad I had a shopping cart to hold onto.  I think I'm going to buy a rollater -- one of those walkers you can stop and sit on when you get tired.  It's probably the only way to go when you go to a store without a scooter to drive.

Today was a no gain day -- couldn't do anything at all without symptoms, so why bother.  I don't really know what to do.  I can't get treated until I get bad enough to go out of state to a PH Center -- they won't do anything here in Helena.  When I get to that point I'll have to quit work and go on disability -- they don't let you apply while you're still working.   So is this the way it is going to be?  Sitting at home -- trying to clean or shop or exercise or whatever and being limited by symptoms?  Has anyone gotten to the point where they don't even think about having PH?

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Doing well, except...

Can't believe it was September 7 when I last blogged.  I have been reading everybody else's entries.  Good to try and keep up with other's lives.  Sometimes I feel stuck in a time warp.

Here's how it's been for me -- Doing pretty good, still going to work, still swimming after work a few times a week, though it isn't as easy as used to be.  Of course, the barometer has changed and it's not summer anymore.  It is much colder here.

I've been having more CPAP intolerance lately -- I wonder if that is weather related, also.  Last night I woke up and couldn't breathe at all.  I didn't know what to do so I used an asthma inhaler -- it did not seem like it worked.  I was very anxious.  So I took a klonopin -- was my doctor right that anxiety was my problem with the CPAP? 

I was prescribed klonopin just to tolerate the CPAP machine.  But I didn't want addiction, tolerance, etc. to aids like that, and thought I was getting used to the darn machine.  So I stopped using for a couple of weeks -- I guess addiction to a minor bezodiazapene is probably the least of my worries, so I should get over myself....

Good news -- At least I have SOME health coverage!  The VA has accepted me into their healthcare system.  So my little stint in the Army 30 + years ago has really paid off.  Back then I was an Ear, Nose and Throat Specialist -- a medical/surgical assistant in civilian terms.  I also fitted soldiers for ear plugs and gave hearing tests.  The job was very interesting and I learned a lot about being in the world, working a job, becoming dependable, responsible, etc.

The regular insurers denied me for the right heart failure, pulmonary hypertension, and said, "Besides that, you're fat!" I'd like to see any of those underwriters run a marathon with pulmonary hypertension.  There are some days when I can exercise a whole 9 minutes without stopping.  And it's not like I don't try.  I have been trying, my whole life.  I wore my knees out on the stairmaster in my 20s and 30s, because that was the elliptical of its day -- the machine that burned more calories than anything else and made you fitter in a shorter period of time.  

I've decided I really need the walker / rollator in my life so I can keep walking.  Yesterday, walking a couple blocks to get drinks for people in the office took me almost an hour because of how many rest stops I had to take.  I'm going to ask the VA doctor if I can get a prescription for the rollator -- the walker with a seat on it and a basket -- so I can continue walking as much as possible.  The dizziness, fatigue, shortness of breath -- all these can be overcome?

So I've still got the fighting spirit and will ask a little harder for help with this disease.  I am trying to focus on what exactly is bothering me instead of thinking that it all is so overwhelming.  Then I can formulate some kind of plan to deal with the obstacle.

I'm not certain how much longer I'll be able to work, but I'm going to try as hard as I can to keep going.  I love my job. It is interesting, varied, and I have a great boss and co-workers.  I like learning all the new things that come along with the job. 

On another note -- My cats are great heaters.  They give off at least 10,000 CTUs (cat thermal units) and make your legs & feet feel great when they sleep with you.

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Just a Beautiful Day

It's beautiful out -- high 60's and 70's.  Looks like all the trees were suddenly sprayed all these gorgeous colors -- yellow, orange, magenta, pink, lavender, etc.  Now how did all the homeowners in Helena have this done over the weekend?

It's just like synchronized lawn mowing.  Have you ever seen a community where everybody's lawn is mowed and wondered how it all happened at the same time?  In my travels I've wondered about thinks like this.

I'm having fun at work, just doing my job and being in the Zen of it all -- what's that?  Stock Market Crash?  Whatever! 

It's just too beautiful a day to worry about much.  I'm here where I am supposed to be, doing what I should be doing.

But seriously, I do hope this economic stuff will all work out -- that Congress can agree on what to do.

Take care, everybody.  I see a VA doctor tomorrow for the first time.  Susan

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A Good Experience at the VA

I went to the Ft. Harrison VA Medical Center for my first appointment September 30.  I drew a very capable, very personable, young lady for my primary doctor, and I must say, I am impressed!

The first thing she said to me was that I was new to the VA system and it would be different than I expected.  I tensed up, expecting her to say that they did not cover non-service related stuff or some other disqualifier, but she went on -- "For one thing we have no pulmonologist on staff.  I am going to have to send you to Salt Lake City."  

So she types some things in the computer -- now all my prescriptions are coming to me in the mail from a central pharmacy in Kansas.  She did consults for the cardiologist and pulmonologist in Salt Lake -- this is one of their pulmonary centers.  She told me to be flexible -- if they ask if you want to come back for tests or stay for them, stay; it's easier. 

Plus -- she ordered me a rollator, right away!  It should be on my porch today or tomorrow. 

I was pretty organized with the diagnosis sheet, med list, list of issues for the visit, etc., but this outfit is super organized.  The next day the travel office called me and told me to bring my medical records in as soon as I get them so they could set up the consults out of state.  The nurse called, said I should fast and come in for labs.  Prosthetics called and said the rollator was on its way.  The Doctor called back and asked about a copy of my most recent sleep study so she could order a CPAP for me.

I never had it so good on private insurance!  Plus this doctor is willing to get my PH symptoms treated.  She even has another patient -- hope I meet her -- who has pulmonary hypertension. 

So that's my good news.  I'll be evaluated in Salt Lake in 30 days or less and see the primary doctor in 2 months.

Cheryl asked what I do for a living that I like it so much.  I am a paralegal, and I think it is my perspective on life that makes my job so enjoyable.  I cut my teeth on unfair competition, trademark infringement, civil litigation and such and I was totally stressed out most of the time.  But after a dozen years driving a semi truck, I am so happy to be in the office and home every night!

I work for a small firm in downtown Helena.  We do a little bit of personal injury, and a lot of insurance defense, professional malpractice, things like that.  I have it good, with my own office, and a great boss and co-workers.  In fact I had to tell my boss today about the evaluations -- I try and be open about my illness and needs, just like I would like everybody else to be open to me.  He is the greatest, nicest, most wonderful boss anyone could have.  For evidence, his secretary has been with him 23 years. 

I love my job.  I am independent.  It is up to me to do the assignments the way I see fit, mostly. It is interesting, varied, sometimes a little scrapbooky when i make exhibit tabs.  I also do a lot of creative writing.  The law is made of words -- we're all verbivores here.  A novelist might write 1,000 words a day -- a lawyer 50,000. 

I interview witnesses, prepare medical summaries, interview summaries, analyze files, crunch numbers, organize huge boxes of material, find what is missing in the medical records, write a number of different reports, letters, declarations, legal pleadings, discovery requests -- on my own or for the lawyers' signature. 

And of course, sometimes my brain doesn't work and I inhale oxygen.  Anyway, I don't want my job to end any sooner than it has to.  I love being downtown, driving my sports car, interacting with people, reading and writing professionally, pushing cases through the system.  I'm just like everybody else, but I get short of breath and dizzy, and get some angina and nausea now and then. 

I want to remain valuable as long as possible.  I hope the treatments will keep me working.  I hope it gets better than this.  I already feel better, having this new doctor and the VA system behind me. 

Take care, everyone.  Susan

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It's Caturday

It's Caturday -- and I feel like sleeping with the cats.  It was raining last night and all three ended up in the bed, cuddling.  Today feels lazy, lazy.

I got the rollator!  It came via truck during the vice-presidential debate.  Like Christmas -- Sarah did well at the debate, and the rollator.

I named my rollator "Mrs. Astor," because that's what Eva called me after my good VA experience.  She says I'm "Mrs. Astor" because I get everything I want.

So Mrs. Astor and I went to work on Friday and she is quite a help around the office.  I use the seat  as a tray to hole punch papers next to my desk, and sit down on her while I'm making copies.  We took a couple walks in the walking mall, and I feel like she's going to give me part of my life back, since I no longer have to fear getting dizzy or falling.  Plus, she carries my oxygen tank, so I use that more.

I love Mrs.  Astor!  I'm already doing more walking.  Shopping in places that didn't have scooters to ride was too sickening and scary before, because after walking a ways down the isle I would start getting dizzy and almost blacking out -- but now with Mrs. Astor, I can just sit down and rest.  Plus she's there in case I fall and I can use her to help me sit up!  I am so gratefull.  I don't feel like an old lady with a walker at 51 -- I feel empowered!

I hope everybody gets some kind of thing they need to help cope with their PH.  It makes a big difference.

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Going to Salt Lake

I wrote a great post, if I do say so myself, and lost it while looking for my picture of Mrs. Astor.  She is one Righteous Rollator, and I plan to trick her out with a horn, flags, a cup holder, turn signals, a light, her name in sparkles, you name it!

The VA is arranging transport for me from Helena, MT to Salt Lake and I have appointments in pulmonology and cardiology November 12th and 13th.  My hope for the visit is that they will do the right heart catheterization and try out various therapies on my pulmonary artery to come up with a treatment for my symptoms.  I'm also hoping the treatment prolongs my life long enough for our good friends up north, the Canadians at St. Michael's Hospital, to finish their stem cell research and cure us all.  Yay Canada, eh!

November 15th is pulmonary hypertension awareness day and I am assembling a packet of information for my co-workers.  I will be in Utah that date, so I will leave one for each of them.  I feel they deserve some information.  I hope not to scare them, but to help ease their minds that this is a rare disease and not contagious. I think they're freaked because they've seen me go from "Nothing wrong" to SOB to memory problems to the rollator and almost continuous oxygen use.  Any suggestions what to put in my packet?

I'm wondering how to handle Mrs. Astor, my suitcase on wheels, the portable oxygen concentrator I'm borrowing from the VA for the trip, my laptop (internet!), my meds (a drawer full), etc.  Any logistics experts out there?

Take care everyone -- I'm full of hope -- Susan

Mrs. Astor!

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My Trip to Salt Lake

Hi everybody -- It's been great at the Salt Lake VA Hospital.  I saw the PH specialist first, (2), then cardiologists (3).  10 vials of blood, arterial blood gasses, passed out during spirometry, had a right heart cath.  Got a new CPAP with automatic pressures and increased oxygen to 4 liters at night.  Bottom line:  I was in acute heart failure.  My former doctors were undertreating my diastolic dysfunction and congestive heart failure enough -- same with my lung problems.  The new doctors promise to work harder at finding out just what is causing my PH so they can treat it appropriately. 

I felt so fortunate -- about 4 hours with the lung specialists, 2 hrs with the cardiologists and 3 hours with the nurse practitioner, who also gave me a new automatic blood pressure cuff.

On travel:  The airlines (United and Delta), were great -- they had oxygen waiting and were prepared for my flights.  I didn't have to call oxygen desks and argue with anyone.  They boarded me first, then had wheel chairs waiting for me to go to the next gates.  They were all very nice and accommodating.

I did not have the oxygen promised on my two Denver layovers like my VA letter said I would.  I had to argue with the DIA assistance desk, show my letter, call my home oxygen company -- no one had my order.  Finally the guy gave me a tank on the first layover.  Going home -- not so fortunate.  The guy at the same desk said, "Go to your airlines -- I have nothing to do with that."  I tried to show him my letter from the VA saying I would have oxygen for the layover and he would not even look at it.  He had oxygen tanks behind him but would not dispense one. 

I called the company supposedly responsible for the layover oxygen (Roth, Brighton); (yes, I'll name names), and they said to go to the DIA assistance desk.  I told they guy it was about 3/4 mile from my gate -- would he call them and have them bring me the oxygen -- "No way."  "Check with your ticket agent. 

The Roth Brighton guy called back and said he could meet me outside the airport at the arrival gate -- I told him I could not do it.  At first he me to go to the ticket agent.  There is no ticket agent here -- this layover is like, 5 hours.  Then he said, again, go back to the DIA desk.  I told him no way -- 3/4 mile away, and I'm not dealing with the idiot that says he has nothing to do with it unless he calls him first.  He says he can't call because he does not have the phone number.  I ask him if he has directory assistance and he says no.  So ultimately told him, "forget it."  So much for layover oxygen.  My O2 sats are ok for the moment -- but I am going to insist on a portable concentrator next time.

Lodging:  The hospital Hoptel was great -- they had a room with oxygen and a patient dining room I could go for meals, as well as a few coffee shops.  I stayed in a ward room the first night, because the "reservation" for the Hoptel somehow didn't go through and all they had was a room without oxygen.  But everything worked out great that way.

Mrs. Astor is green with envy.  She is not "tricked out" or "Pimped" yet -- and she saw one Vietname Vet GI's rig -- 2 orange and 2 USA flags.  Bell bicycle lights on each arm, cup holder, oxygen tank holder, horn that played songs -- you name it and this guy's got it. 

Rest assured Mrs. Astor will be better prepared for the followup appointments in late February!

Happy ending:  I feel better already.  The increased oxygen and CPAP pressures must have dropped my pressures a bit -- from 45 to 32.  Also, my heart feels more relaxed, and I feel like I finally have some competent doctors.  I got to see my baby sister, and R.N., Capt. in the Air Force reserves, since she flew out just to be with me.  We had a good visit and she was a big help to me in the hospital.  We also saw the "Bodyworks" exhibit -- If it comes to your area, go see it!  It's anatomy like you haven't seen before -- real human bodies in plastic and various parts featured, internal structures and such.  Fascinating.

Happy ending II:  303 342 0400  I guess the guy from the oxygen company felt guilty ---- He did arrange for the DIA assistance desk to deliver it to me after I called the number above that he gave me.  So in case any of you need this number in the future --- there it is!  

DIA guy asked how to recognize me -- "I'm the one with my fingers turning blue!"

Take care, everybody, and be difficult when you need to.  Susan

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